Hello — I’m all in for a Dercum’s group. It’s so difficult to find anyone who has even heard of it so I’d be interested in other’s experiences and recommendations. I was diagnosed with Dercum’s in 2017. It seems like there can be a collection of symptoms/diagnoses that overlap. They may include Ehlers-Danlos Syndrome (mine is the Vascular type), Mast Cell Activation Syndrome (MCAS), allergies, Dysautonomia, thyroid issues, fibromyalgia symptoms, lymphedema, positive autoimmune testing — and frustration! So little is known, so few professionals are aware or treating it.
Do any of you have these issues in common? What other issues do you think we might share?
Does anyone know any knowledgeable docs in Wi, MN, or IL, IA - I’m in Madison (hence my MadvZebra name).
I’ve had 3 really bothersome lipomas removed - 2 were angiolipomas. I do tend to get “flares” of intensified symptoms. Anyhow - I feel for all of you.